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Affordable Care Act and the Individual and Small Group Insurance Marketplace

The Patient Protection and Affordable Care Act (ACA) was enacted into law on March 23, 2010 with a phase-in implementation plan and many key provisions becoming effective for the 2014 plan year.

The ACA was primarily designed to make coverage for individuals not covered by employer-sponsored plans or government programs – such as Medicaid or Medicare – more affordable and readily available to consumers, including those with health conditions who had often been denied coverage, or charged more, because of their conditions.

The ACA made significant changes to improve the individual and small group health insurance markets. Individuals who did not have access to health insurance previously are now able to shop for and obtain coverage with the availability, for most, of tax credits to help pay for premiums and cost-sharing subsidies to pay for out-of-pocket costs such as deductibles. The ACA also gave states the option to expand their Medicaid program to cover more low-income adults and receive additional federal funds to pay for this new population of beneficiaries.

Another major component of the ACA is the host of patient protections that ensure that individual and small group health plans are adequate and more similar in benefit design to employer-sponsored health plans. Prior to the ACA, many individuals with epilepsy and other chronic conditions did not have access to health insurance that was affordable and sufficient to cover their health care needs. Individuals often could not gain coverage because of pre-existing conditions, exorbitant costs, and mandatory waiting periods before they could gain coverage via a state high-risk pool or Medicare.

Open Enrollment

Affordable Care Act (ACA) Open Enrollment 2019

The Open Enrollment Period for the Health Insurance Marketplace (aka the health insurance exchange) will be November 1, 2018 – December 15, 2018 for coverage beginning January 1, 2019. Learn more at healthcare.gov.

Preserving Patient Protections Created by the Affordable Care Act

The Epilepsy Foundation advocates for access to quality health care that is affordable and comprehensive, and that meets the needs of individuals with serious and chronic health conditions and disabilities. We are dedicated to implementation, strengthening and enforcement of the patient protections created by the Patient Protection and Affordable Care Act (ACA), especially as they relate to health plans offered in the ACA Marketplace and Medicaid expansion.

As Congress and the Administration consider health care reform proposals, we continue to raise awareness of the critical role patient protections created by the ACA play in ensuring people living with epilepsy have access to quality care. The ACA allowed millions of individuals – many who had been unable to access health insurance in the past because of denials and exclusions for pre-existing conditions, as well as unaffordable premiums – to gain meaningful access to quality and affordable care though the ACA Marketplace and Medicaid expansion.

Learn about the consequences for our community if the ACA is repealed by reading a blog post from the Epilepsy Foundation’s public policy team here.

On October 8, 2018, the Epilepsy Foundation joined 11 other national patient groups in filing an amicus curiae (or friend-of-the-court) brief in support of the U.S. District Court case, Association for Community Affiliated Plans v. United States, challenging the recently finalized federal rule on short-term health insurance plans. The suit was originally filed by the Association for Community Affiliated Plans, National Alliance on Mental Illness, Mental Health America, American Psychiatric Association, AIDS United, National Partnership for Women & Families, and Little Lobbyists on September 14, 2018.

The brief argues that the expansion of these plans from three to almost 12 months, with the ability to renew, will weaken protections for individuals with pre-existing conditions and destabilize the insurance marketplace by siphoning younger, healthier individuals out of the market, leading to increased – potentially unaffordable – premium rates for individuals living with chronic conditions like epilepsy. People with pre-existing conditions are at risk of being underinsured or losing coverage altogether if premiums become too high. Short-term health plans are not a substitute for comprehensive, affordable health care.

Due to the overwhelming risk to people with pre-existing conditions and the insurance market, the amicus brief asks the court to issue a preliminary injunction stopping the rule and preserving current limits on short-terms plans.

On August 1, 2018, the departments of Health and Human Services, Labor, and the Treasury issued a final rule on short-term limited-duration health plans. The final rule reverses the previous maximum period of short term plans of less than 3 months. Under the final rule, consumers could purchase short-term plans that cover an initial period of just under 12 months and could be renewed for up to 36 months. These plans are not required to cover the ten essential health benefits afforded by the Affordable Care Act (ACA). Short-term plans can also charge more or deny coverage if a patient has a pre-existing condition. Again, as with Association Health Plans, these short-term plans are expected to siphon healthier people out of the marketplace, most likely resulting in higher premiums and further destabilizing the marketplace.

The Epilepsy Foundation signed onto a statement with over 26 other patient advocacy organizations expressing serious concern over the decision to finalize this short-term, limited-duration rule, which will reintroduce health insurance discrimination based on gender, health status, age, and pre-existing conditions.

Association Health Plan Final Rule Released

On June 19, 2018, the Administration released the final rule on Association Health Plans (AHPs), which will expand the definition of an employer, allowing more small businesses and self-employed individuals to join together for the sole purpose of offering health insurance through association health plans. The Epilepsy Foundation, along with 25 other patient advocacy organizations, released a statement regarding the final rule expressing concern over the repercussions the final rule will have on patients with pre-existing conditions or other serious and chronic health issues and the destabilization of the individual marketplace.

In the final rule, AHPs will not be able to deny individuals with pre-existing conditions coverage or charge them more, however these plans will not be required to cover Essential Health Benefits or comply with other patient protections created by the Affordable Care Act (ACA). Without comprehensive coverage, many who purchase these plans will be left underinsured.

Since AHPs do not have to cover all Essential Health Benefits or comply with patient protections created by the ACA, the premiums are expected to be lower and accordingly siphon healthier people out of the marketplace. Premiums are likely to increase for consumers, which will further destabilize the marketplace in which individuals with complex chronic conditions like epilepsy rely on for high-quality, affordable care.

Short-Term Limited Duration Plans Proposed Rule Released

On February 19, 2018 the Department of Health and Human Services released a proposed rule that would allow insurance companies to offer short-term limited duration health plans – which do not have to cover Essential Health Benefits -- for just under 12 months, as opposed to the current limit of just under three months. While short-term limited duration plans currently exist to help individuals navigate insurance coverage gaps, the proposal would allow short-term limited duration plans to become a substitute for comprehensive annual plans. These short-term limited duration plans would be able to charge lower premiums and draw in younger, healthier individuals because they do not have to cover all Essential Health Benefits or comply with patient protections created by the ACA. These changes would destabilize the ACA marketplace on which people with complex chronic conditions like epilepsy who rely on for quality, affordable care.

We joined other patient advocacy groups in a statement express our concerns with the proposal that would allow short-term limited duration plans to become a substitute for comprehensive annual plans.

On January 4, 2018 the Department of Labor released a proposed rule that would expand the definition of an employer, allowing more small businesses and self-employed individuals to join together for the sole purpose of offering health insurance through association health plans. It is unclear how these association health plans would be regulated and importantly, they would not be required to cover Essential Health Benefits and guarantee other patient protections created by the ACA. These plans would be able to charge lower premiums and draw in younger, healthier individuals because they do not have to cover all Essential Health Benefits or comply with patient protections created by the ACA. These changes would destabilize the ACA marketplace on which people with complex chronic conditions like epilepsy who rely on for quality, affordable care. We are bringing together state and national patient and community groups to issue public comments on our concerns about how the proposal could negatively impact access to quality, affordable health care.

On October 12, 2017 the President issued an executive order directing federal agencies to explore changes to association health plans and short-term limited duration plans. In response to this directive, the Departments of Labor and Health and Human Services have issued proposed rules earlier this year.

Any changes to the individual and small group insurance market can have a profound impact on access, quality and affordability for people living with complex chronic conditions like epilepsy. If association health plans and short-term limited duration plans are allowed to provide less comprehensive coverage they can charge lower premiums and draw in younger, healthier individuals and this shift comes at the high cost of destabilizing the ACA marketplace. By eroding the stability of the individual and small employer insurance market, we risk returning to the days when people with pre-existing conditions couldn’t obtain health insurance, could only obtain a high-cost policy that did not cover medications and services related to their pre-existing condition, or had to rely on severely underfunded high-risk pools with waiting periods for coverage. People living with serious and complex chronic conditions likely would not be able to obtain insurance policies that meet their needs with association health plans and especially with short-term limited duration plans, and they would face higher cost-sharing and out-of-pocket costs in their ACA marketplace plans.

On November 27, 2017, the Epilepsy Foundation submitted comments to U.S. Department of Health and Human Services. The letter emphasizes concern over the proposed rule, Notice of Benefit Payment Parameters for 2019, which would allow states to scale back essential health benefits insurers must offer to beneficiaries in the future. The Epilepsy Foundation also signed onto an I Am Essential comment letter with 138 other patient and community organizations. Read the letters below.

On November 14, 2017, 16 patient consumer groups issued a statement in relation to the current tax reform debate, which now includes proposals to repeal the individual mandate for health insurance coverage. Any changes Congress makes to our health care system should be focused upon expanding access to quality, affordable health coverage for all Americans. Eliminating the individual mandate tax penalty will result in 13 million fewer Americans having health insurance and an increase in premiums, especially for those with chronic conditions. Read the full statement below.

On November 30, 2017, patient consumer groups issued a statement highlighting CBOs analysis that the ACA Stabilization Bill drafted by Sens. Alexander and Murray would not fix a repeal of the individual mandate, which is being proposed as part of tax reform proposals. CBO confirmed that repealing the mandate would raise premiums in the individual health insurance market by an average of 10 percent, even with passage of the Alexander-Murray bill. Read the full statement below.

Epilepsy Foundation Has Joined More Than 200 Patient Groups to Support Bipartisan ACA Stabilization Bill

TheBipartisan Health Care Stabilization Act of 2017, introduced by Senators Alexander and Murray in October 2017, would help to stabilize the individual insurance market and the ACA Marketplace. See the press release below for the full list of supports of this bill.

On October 19, 2017, Senators Alexander and Murray, leaders of the Senate Committee on Health, Education, Labor and Pensions, introduced a bipartisan bill to stabilize the Affordable Care Act (ACA) Marketplace. This bill, theBipartisan Health Care Stabilization Act of 2017, has many cosponsors from each party. The proposal would extend cost-sharing reduction (CSR) payments, and includes other mechanisms of stabilization. CSRs help low income individuals and families (who make up to 250% of the federal poverty line) cover out-of-pocket health care costs like deductibles and copays for plans offered in the ACA Marketplace. The proposal would also preserve and support key protections for individuals with pre-existing conditions.

The Epilepsy Foundation, as part of the I Am Essential coalition, has previously applauded the HELP committee's bipartisan efforts, which included summer hearings with a variety of stakeholders like Governors and Insurance Commissioners. We look forward to engaging in the next steps of this process with the broader patient community - which will include a thorough and ongoing review of this proposal's impact on patients and consumers as the bill moves through regular order.

The Alexander-Murray deal signals an encouraging move away from partisan proposals to "repeal and replace" the ACA that also included reforms to Medicaid - on which more than a third of people living with epilepsy rely on for their care.

On October 18, 2017, we joined a statement with many others in the patient community in support of the agreement. Read the statement below.

On October 26, 2017, after the nonpartisan Congressional Budget Office (CBO) published a score of the Alexander-Murray bill, we joined a statement with many others in the patient community continuing to express support for the bill and encouraging others to join as sponsors. Read the statement below.

On October 12, 2017, President Trump issued an executive order that directs agencies to make changes to current implementation of the Affordable Care Act (ACA). Federal agencies will need to issue rules in order to effectuate this order. This executive order would encourage association health plans to enter the insurance market and change the rules governing the length and renewability of short-term catastrophic health insurance plans. The impact that these changes could have on people with pre-existing conditions like epilepsy is significant because these new types of plans would not be required to cover the Essential Health Benefits. Allowing some plans to not cover these comprehensive benefits would mean that cost for plans that do will skyrocket - and these are the plans that those with series health needs rely on for meaningful coverage.

The Epilepsy Foundation joined a statement with many others in the patient community in opposition to this executive order. Read the statement below.

On October 12, 2017, President Trump announced that the administration would no longer continue the cost sharing reduction (CSR) payments, which are part of the Affordable Care Act (ACA). These payments help individuals and families up to 250% of the federal poverty line cover out-of-pocket health care costs like deductibles and copayments.

The Epilepsy Foundation joined a statement with many others in the patient community expressing concern for this decision and urging Congress to fund this program. Read the statement below.

On September 26, 2017, Senate leadership and the authors of the latest proposal to "repeal and replace" the ACA, Sens. Graham and Cassidy, held a press conference to announce that they would not be holding a vote on the Senate floor on the proposal this week prior to the expiration of a special procedural mechanism that would have allowed the bill to pass with only 50 votes.

They also announced that they hope to continue discussions to eventually develop a health care reform proposal with more support.

Senate Again Considering Dangerous Health Care Bill

On September 13, 2017, Senator Graham introduced a new ACA "repeal and replace" proposal as an amendment to the House-passed American Health Care Act, which would threaten health insurance coverage for millions of Americans - including many with epilepsy. This bill, referred to widely as Graham-Cassidy, is similar to other proposals defeated this summer. It would drastically cut the entire Medicaid program and could allow some insurance plans to drop coverage for basic services, including emergency care, prescription medications, and chronic disease treatment.

On Monday, September 25, the Senate Committee on Finance held a hearing on this proposal.

Senate Votes Down Bill to Unravel ACA

On July 28, 2017, the Senate ended debate and voted on the Health Care Freedom Act, a bill that would have left millions without health coverage and further destabilized access to health care for many Americans. This bill was defeated and now the health care debate can move on as a bipartisan effort to help all Americans including those with epilepsy and chronic conditions.

Senate Debating ACA Repeal Proposals

On July 25, 2017, the U.S. Senate voted in favor of a motion to proceed and began debate on the Senate floor on efforts to "repeal and replace" the Affordable Care Act (ACA). Discussions continue on the Senate floor on July 26 as senators work to identify a proposal that may garner the necessary votes (50) for final passage of a bill in the Senate. If the Senate passes a bill, it would then go to the House for a vote before heading to the President, or it could go to conference where any differences from the House-passed American Health Care Act (passed on May 4, 2017) would be resolved.

The Epilepsy Foundation is monitoring the floor debate closely and has been expressing opposition to any proposal that would be harmful to people living with epilepsy, especially those that would erode patient protections created by the ACA and cut Medicaid funding - a program that provides health care for more than one third of people living with epilepsy. The Epilepsy Foundation has communicated consistently with Congress to highlight issues with bills that are currently being debated.

On May 17, 2017, the Centers for Medicare & Medicaid Services (CMS) announced a simplified direct enrollment process for consumers signing up for individual market coverage through health care exchanges that use HealthCare.gov. Consumers applying for individual coverage through direct enrollment partners will now be able to complete their application using only one website, enabling easier access to healthcare comparison shopping. In the past, consumers who signed up for health care coverage using a third-party website were completed to HealthCare.gov to complete their application.

Section 1332 of the Affordable Care Act (ACA) allows states to apply for State Innovation Waivers to pursue innovative strategies for providing high-quality, affordable health coverage to their residents. The Centers for Medicare & Medicaid Services (CMS) has produced a checklist to help states pursuing State Innovation Waivers as they develop and complete the required elements of the application, with specific requirements related to high-risk pools and state reinsurance.

On May 4, 2017, the U.S. House of Representatives voted on and passed the American Health Care Act (AHCA), which would repeal critical patient protections created by the Affordable Care Act (ACA) and radically restructure the way the federal government supports states’ Medicaid programs. The AHCA would cut Medicaid funding by $840 billion over the next ten years by instituting per-capita caps on federal support to the states for the program; and allow states to eliminate Essential Health Benefits requirements for plans offered in the ACA Marketplaces, which ensure plans cover prescription drugs, hospitalization, and emergency services, among other basic benefits.

Consortium for Citizens with Disabilities (CCD) Reacts to House Passage of AHCA

The Consortium for Citizens with Disabilities (CCD), the country’s largest coalition of national disability groups, is gravely concerned about the House of Representative’s passage of the American Health Care Act. The AHCA will harm tens of millions in the United States, but especially people with disabilities who will face coverage loss, higher costs, and fewer options. Read the full statement below.

On March 16, 2017, the Epilepsy Foundation joined members of the Consortium for Citizens with Disabilities (CCD) and other national organizations in a letter to Congress expressing serious concerns with the AHCA. The letter urged members to oppose the legislation as currently drafted because of significant restructuring and cuts to the Medicaid program, which provides lifesaving medications and health care services for more than a third of people living with epilepsy, including children from low-income families and/or with severe forms of epilepsy, as well as children and adults living with disabilities. Read the letter below.

On March 3, 2017, the Epilepsy Foundation joined 100 national organizations representing older Americans and people with disabilities in a letter to Congressional leadership urging Congress not to make radical structural changes to Medicaid through block grants or per capita caps. These kinds of changes would lead to fewer services and higher health care costs for people with epilepsy, putting their care at risk. Read our letter below.

The Epilepsy Foundation, as a leader of the I Am Essential coalition, joined 200 patient groups, including all Epilepsy Foundation chapters and affiliates across the country, in sending a February 10, 2017 letter to recently-confirmed Secretary of Health and Human Services Dr. Tom Price, urging him to maintain existing patient protections enacted in the Affordable Care Act. It is especially important to advocate for patient protections like the Essential Health Benefits and patient access to prescription drugs their providers prescribe as Congress and the Administration consider changes to current healthcare laws and regulations.

On January 11, 2017, the Epilepsy Foundation sent a letter to President-elect Trump and Congressional leadership, highlighting the provisions in the Affordable Care Act that have been important to the epilepsy community. Read our letter at the link below.

Proposals to "Repeal and Replace" the ACA

The Better Care Reconciliation Act (BCRA), the American Health Care Act (AHCA), and other related proposals, including a recent amendment to AHCA referred to widely as Graham-Cassidy, would repeal critical patient protections created by the Affordable Care Act (ACA) and radically restructure the way the federal government supports states’ Medicaid programs.

Essential Health Benefits (EHBs) requirements created by the ACA ensure that basic services like prescription drugs, hospitalizations, and emergency services are covered by plans offered in the ACA Marketplace and Medicaid expansion plans. The repeal and replace plans propose to allow states to waive these requirements.

Learn more about Essential Health Benefits and how proposals to allow states to waive EHB requirements would impact access to quality care within and beyond the ACA Marketplacehere.

High-Risk Pools

Many people living with epilepsy who before the ACA couldn’t obtain health insurance because of a pre-existing condition, or had to rely on severely underfunded high-risk pools with waiting periods for coverage, could lose access to quality care if the proposals within the BCRA and AHCA become law. The proposed solution in these bill is funding for high-risk pools; however, these did not work prior to ACA and will no work again.

Learn more about the history of high-risk pools and why the proposals and funding for high-risk pools may not be enough to ensure access to quality care for people living with complex chronic conditions here.

Medicaid Per Capita Caps

More than 70 million Americans rely on Medicaidand the related Children’s Health Insurance Program (CHIP) for their health care and medication needs – including a third of people living with epilepsy. The BCRA, AHCA, and related proposals would radically restructure the way the federal government supports states’ Medicaid programs by instituting per-capita caps that would lead to hundreds of billions in funding cuts over the next ten years, which would result in a reduction of benefits and services.

On June 15, the Epilepsy Foundation joined dozens of other organizations representing patients, consumers, and health care providers in a letter to Senate Republican leaders, expressing grave concerns about the AHCA's proposals to restructure Medicaid. Read the letter below.

Coalitions

I Am Essential Coalition

I Am Essential unites diverse national and state patient and community organizations, each representing a unique mission, to ensure access to quality and affordable health care for the millions of individuals and families enrolled in Qualified Health Plans established under the Affordable Care Act (ACA).

Why Advocacy Matters

The Epilepsy Foundation is collecting the stories of people with epilepsy who are affected by our policy priorities, including Medicaid and access to affordable health care. Visit our Advocacy Matters page to read their stories and share your own.